There is a major debate right now about whether or not to put terminal patients on antibiotics. Objectively, I would say it's a bad idea, as overuse of antibiotics has caused so many resistant strains of bacteria. Subjectively, of course, I know how I would feel if my LO was denied ABO's if he had pneumonia or UTI.

Sat Feb 27, 2010 6:54 pm

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Comment on antibotics, I agree with your thoughts but from the many caregivers that I have been in contact with over time, many will use them but then when the infections keep coming back at some point the caregiver will say , enough!

_________________Irene Selak

Sat Feb 27, 2010 6:57 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

I'm afraid that if this pressure sore gets cleared up he'll just get more, thus my not wanting to prolong his suffereing. I need to talk with hospice about this. Last 2 times I requested a hospice eval. for him the AFL and his phys. assistant freaked out and thought I was really crazy. From what people on the forum are saying, it's never too early to talk with hospice. Right? Lynn

Sat Feb 27, 2010 7:05 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

When it comes to our LO's end of life period, we need to remember that doing what is right is often counter-intuitive. There's a part of us that wants to hang on at all costs, never 'throw in the towel' or 'give up hope', etc.

I nursed my father through his final weeks of terminal cancer and we did make some hard choices. Comfort was a bigger priority than nourishment, for example. When he was unable to eat or drink, we knew we would not use invasive methods and that the end would come. Why is it so different with dementia than with cancer?? It shouldn't be. Both are terminal diseases.

Last edited by mockturtle on Sat Feb 27, 2010 7:16 pm, edited 1 time in total.

Sat Feb 27, 2010 7:15 pm

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Lynn, Right it is never too early and if for some reason he is denied he will stay in the system and down the road when time marches on eliminates much of the intial intake, I suspect he will be admitted to hospice care! If things do improve over time they could release him too!

_________________Irene Selak

Sat Feb 27, 2010 7:16 pm

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Pat ,
I suspect it has something to do with the duration of the disease, Cancer for the most part is quicker when they can't be helped with Chemo and radiation, with diseases like LBD they seem to go on for a long time and you just get used to the way they are with little thought of the end.

_________________Irene Selak

Sat Feb 27, 2010 7:20 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Good point, Irene. And I was asking the question rhetorically, really, because we don't see them the same. The fact is, it often takes people longer to die from cancer [from initial dx] than from LBD. What's hard is recognizing the final phase AS the final phase and treating it [or not] accordingly. We have few guidelines and none of us wants to be the one to say, 'Yep, no more treatments, this is it.' I guess that's why Hospice is so helpful. Once you put it into their hands, you've made an important decision that also lets the terminal patient off the hook. He or she no longer feels compelled to 'hang in there' and can finally give up the struggle. I know this happens to cancer patients, as they have told me. Maybe it happens with dementia patients, too.

Sat Feb 27, 2010 7:53 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Last summer when my dad had his huge decline, I didn't think he would live beyond a few weeks. I prepared myself for his demise, and actually, I am shocked that he is still alive. My husband is afraid that if my sister and I ask that he not be given IV antibiotics we will be charged with abuse or neglect. It is like torture for everyone, including him, to see him in this condition. As my 83 yr. old aunt keeps telling me, there are a lot worse things than death. Maybe he is hanging in there because he thinks he needs to, despite how miserable he is. (BTW, he screamed at my sister today and at one of his best friends last week, so I guess he IS capable of yelling in the dining room like the head nurse told me.) I am putting a lot of hope in hospice...... Like I've said several times, I've been mourning his loss since he had this dramatic, horrible change last summer. I hope he doesn't have to continue with this torturous life much longer.... It kills me to see him this way.

Sat Feb 27, 2010 8:33 pm

Hagar

Joined: Sat Oct 17, 2009 8:22 pmPosts: 3Location: Houston, TX

For those of you who may be interested, the Bob of BetBob2 has passed away. Iâm the son and Iâm going to try to pick up the story from where my mother left off.

We met with our doctor and the social worker the next day. According to the doctor the test showed that the pneumonia had receded and that dad should start to become aware of his surrounding, but instead he continued to sleep. At this time, dad hadnât eaten any food nor drank any water in days. The decision was unanimous between us, the doctor and the social worker that hospice would be the best option for dad.

The next question was âwhere should we care for dad?â Do we admit him into a nursing home or do we take him home? My thought was that a nursing home would have the staff to support us and care for dad better. Mother agreed to try it. What can I say, I was completely wrong. Dad got zero care while at the nursing home and we brought him home a couple of days later.

Thanks to our friends and family, mom and I didnât cook a single meal for the next week and a half while we cared for dad. Also, hospice provided a nurse who was very caring to our situation and kept us informed on what would occur next along with an aid to help clean and bath dad.

Dad continued to sleep the majority of the time and refuse both food and water over the next week and a half. Thankfully, dadâs passing was peaceful on the March 8th.

Dad was 65 years old when he passed and he had been fighting LBD for the past 11 years. With a help of Robin, dadâs brain was donated to the Mayo Clinic for research. It was his/our final act of defiance against this horrid disease.

Fri Mar 19, 2010 2:36 pm

dorthea

Joined: Sat Oct 06, 2007 4:28 pmPosts: 781Location: LA

May he rest in peace

Oh, Hager, I am so sorry. I want to thank you for all you have done. Thank you for writing. I'm glad you had help and understanding at the end. Thank you for loving your mother. Thank you for brain donation and please let us know the results... Bob was so young. He was the age of my children.

Dorthea

_________________"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Fri Mar 19, 2010 3:08 pm

mockturtle

Joined: Wed Dec 30, 2009 1:46 pmPosts: 3213Location: WA

Thank you so much for taking the time to update us on your dad's situation. I appreciate knowing what things were done/not done toward the end and how it worked out--it will help us all when we arrive at that point. Our limited experience with my husband in a SNF was bad, too. I pray it won't be necessary to place him again. God bless you and your family! ---Pat

Fri Mar 19, 2010 3:28 pm

irene selak

Joined: Sat Jan 03, 2009 2:59 pmPosts: 1978

Hagar,
Please except my deepest condolences to your mom and you , 11 yrs is a long fight but your Dad is now at peace, I am glad that hospice was so helpful and I want to thank you for your donation, that's my biggest hope is to find a cure for this disease and to help others along the way!
Be kind to yourselves and take care of your mom!

I am very sorry for the profound loss of your father. Let your mother know that I will call soon. You've all been very busy with family and friends.

Thank you for the most generous donation of your father's brain for medical research and to confirm the final diagnosis. I learned about the particular pathology assistant we used for your family's arrangements through someone else here on the LBDA Forum. So, in essence, this other LBD family was helping your LBD family, and we are now two steps closer towards researching these neurodegenerative disorders.

Robin

Fri Mar 19, 2010 6:49 pm

LTCVT

Joined: Fri Jan 15, 2010 9:33 pmPosts: 3441Location: Vermont

Hagar - my condolences to you and your family and friends. Your dad was very young when he developed LBD so I am sure it was especially hard for everyone, especially him. On behalf of my own dad and countless others with this, I am sure your donation will help others eventually. Take comfort in the fact that he is no longer suffering from this terrible disease, and take care of yourselves. Lynn

Fri Mar 19, 2010 9:43 pm

Hagar

Joined: Sat Oct 17, 2009 8:22 pmPosts: 3Location: Houston, TX

Re: Bacterial Pneumonia

I read an article today about a soldier, who was wounded in Afghanistan and after years of suffering, is ending his journey through hospice care. His story struck a chord within me and reminded me of the suffering my parents went through a little over three years ago.

I read all of Mom's posts on this board and many of the posts its members. I want to thank all of you for the outpouring of love and support all of you gave her. I've shared my parent’s story with many of my friends who have loved ones in a similar circumstance and have come to realize that there is a special place in heaven for primary care givers like my mother and many of you.

Over the years, Mom's has come to grips with Dad's passing and today is happy again. Mom's become very active by exercising on a daily basis (three mile walks with Lucky her dog), keeping an organic garden, taking/took dancing lessons and has ventured out on a few dates.

I'm not sure why I felt the need to sharing this with y'all other than to say that today both my parents are in a better place and that life will return to, well, something close normal.

May God bless each of you with the strength to get through this horrible disease.

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